Second Birthday

May 17, 2012, was the second anniversary of my stem cell transplant (my “second birthday” I’ve been told – but with two prior stem cell transplants in 2000 and another back in 1955 I think I have enough now!). As I look back at last year’s post, it strikes me that my report is the same, just more so.

I continue testicular cancer-free (2000) and leukemia-free (2010), and have no expectation of either ever returning. I take great pains with sun protection, to make sure skin cancer doesn’t become my third. I still have a little graft vs. host disease (see last year’s post for a definition), but the GVHD in my legs has almost completely abated and I now have some in my mouth that’s treated with swishing a steroid mouthwash (no, my mouth isn’t “buff”). The best news is that, although still on prednisone, it’s now a comparatively low dose, and I am continuing a slow taper that should be zero by the end of the year if all goes well.

My recovery has not been holding me back at all. I work full time and greatly enjoy my work with my wonderful clients and my very supportive law partner, Lisa Rein. I also am getting lots of good exercise, both walking and bicycling.

Yesterday I took a 30-mile ride to Redmond. On May 13, a 37-mile ride to Jack and Betty’s cabin at Lake Stevens. And, most fun, on May 6 Susan and I, while in New York City to visit Brian and Kolby, rode in the 40-mile “5 Boro Bike Ride” with Seattle friends Bonnie and Larry from the Battery, up through Central Park, Harlem, the Bronx, down the FDR along the East River, into Queens, through Brooklyn, and over the Verrazano Narrows Bridget to the finish at Staten Island. A beautiful sunny day and a great time. We were scheduled to do this ride in 2010 with friends Jim and Susan, but fate intervened.

From Staten Island, with the Verrazano Narrows Bridge we had just crossed in the background

I’m still enjoying my work on the Puget Sound Blood Center board, and have one more year before “term limits” kick in. I’m even coordinating a blood drive at Temple Beth Am on July 10, 1:00-7:00, so if you’re in the North Seattle area, please email me that you’re interested and I’ll schedule you for a time.

We look with great anticipation to Jay’s marriage to Rachel Hughes this August, and we feel so blessed to have them both in Seattle, with Jay one year away from finishing UW Law School.  We are also glad Brian and Kolby are having fun as temporary New Yorkers, but wouldn’t complain if they came back west once she completes her masters degree.

Have a happy summer!

Alan’s Health Update 5-17-2011

I had pretty much stopped doing these, but today it seemed like a good idea to make one more posting.  Today is the first anniversary of my stem cell transplant, received on May 17, 2010.  I am working regularly, feeling good, and at my one-year checkup at Seattle Cancer Care Alliance yesterday was given a good prognosis.  No sign of leukemia in my bone marrow biopsy!  So we’re all pretty happy around here.

I still have issues with Graft vs. Host Disease. For you who are out of practice reading these posts, that is the effect of my donor’s transplanted cells (the “graft”) looking around and seeing nothing but unfamiliar cells (mine – the “host”).  They want to attack these strangers, until such time as they start feeling at home and stop attacking.  In June they attacked my gut; in October to February it was my liver; now it is my skin.  It is mild, and not very uncomfortable, but does need to be treated, and today I started a new course of Prednisone for it.  Not my best friend, but I tolerated it better in the second course than the first, so I’m hoping this third course will be better.

The good news about GVHD is that it means my donated cells are also on a seek-and-destroy mission to attack any microscopic pockets of my old leukemic cells.  The bad news is that I have to remain on immune-suppressing drugs for the foreseeable future, so I need to keep vigilant about things like food-borne illnesses, catching colds, etc.  That’s kind of a drag, but in the grand scheme of things just an inconvenience.

An anticlimax was that we thought today was the day (one year after transplant) that we could find out contact information for my donor.  We learned yesterday that with international donors (you might recall that we believe my donor was from Israel) you have to wait two years.  Drat.

To celebrate today, I took my first bike ride in 14 months – 6 miles to University Village and back.  The picture here is me on my trusty, if slightly rusty, steed.  The other celebration was to write this post.  Hope everyone out there in blog-reading land is well.  And if you’re not, please use this post as a reminder that you CAN get better from some pretty scary diagnoses.

Back in the saddle one year after my transplant

Alan’s health update 1-29-2011

As with past gaps, there’s been mercifully little to report.  My liver function is back to normal and by the end of this coming week I’ll be off of Prednisone entirely.  Then after 3-4 weeks of monitoring whether any graft-versus-host disease returns I’ll be able to start tapering off of my immune-suppressing drug, Tacrolimus.

My life is very close to being back to normal.  I am working regularly and exercising. The main limitation is the immune suppression, which is keeping me off of riding flying germ incubators (airplanes).

I learned today that this is the 10th anniversary of the creation of Seattle Cancer Care Alliance, where I was treated.  If YOU want a treat, take a look at this rap that was created by two Garfield High School students (or alumni; I’m not sure) to celebrate SCCA’s anniversary:  http://www.youtube.com/watch?v=ogourHzUPOk

Alan’s health update 12-17-2010

More good news.  I had another bone marrow biopsy (~200 days after my May 17 stem cell transplant), and once again it shows no leukemia cells.  So I remain in remission.  Also my liver function is back to normal after a large round of prednisone to fight the graft vs. host disease that started attacking the liver in September.  Right now my job is to taper off of the prednisone (this time I started at 90 mg and am now down to 20 mg), and then I can start tapering off of my  main immune system-suppressing drug, called Tacrolimus.

Once I get tapered off of that I can start doing normal-people things again like flying on airplanes (currently known to me as flying incubators), being in large groups without a face mask, eating foods without taking precautions (more than people with normal immune systems do) against food-borne illnesses, etc.

Meanwhile I feel good, I am working regularly (since I work at home I’m safe from the workplace transmission of colds and flu), driving myself, and walking regularly and doing physical therapy daily to build up my muscles that have been eaten up by the prednisone.

Thanks to everyone who has been keeping track of me.  And you all might enjoy this story from the NY Times about a football player who missed an important game so that he could give a life-saving stem cell transplant to a 59-year-old total stranger.  I needed a Kleenex:  http://www.nytimes.com/2010/12/16/sports/ncaafootball/16donor.html?_r=1&emc=eta1

Alan’s health update 11-25-2010

Happy Thanksgiving!  I have had many inquiries into my lack of posts, so I am posting now for two reasons.  One to just bring you up to date and the other to say thank you.  It has now been 6 months since my stem cell transplant on May 17, and despite some bumps along the road I can say that I never expected when I first got diagnosed 11 months ago that my treatment would have gone so smoothly.  My leukemia remains in remission, as it has been since the transplant. 

The “bumps” relate to mild chronic graft vs. host disease, where my donated cells are attacking parts of my body while they get used to the fact that they now belong to the same body.  Originally my battle was in my gut, and an extremely high dosage of Prednisone in June and July successfully fought that off.  Next in mid-September came signs of liver damage revealed by blood tests, an ultrasound and finally a liver biopsy on Nov. 3.  These determined that the problem was again GVHD, and I returned to a new dosage of Prednisone three weeks ago.  I will again taper off this slowly, as my liver numbers return to the normal range and no further flareups occur.  The only negative in the Prednisone is the return of the muscle-wasting effect that I experienced in the summer.  But although my legs have again weakened, I can still get up and down steps slowly, and can still cover 2-3 miles by foot several times a week, with help of my trusty REI trekking poles.

I am back driving, and also back working, about 1/3 time.  My immune system is still suppressed, so I can’t be in large groups without at least a high-filtering mask on, and planes are still out of the question (we’ve already cancelled two planned vacations for this winter).

It is Thanksgiving morning and I have so much to be thankful for.  My health, which improves.  My family, whose love and support has sustained me.  Not just Susan, Brian, Jay and their girlfriends Kolby and Rachel, but Susan’s parents, siblings and nephews; my siblings, nieces, nephews and parents; and so many members of the extended family on both sides.  I can’t thank enough friends from our Temple including our rabbis; friends and colleagues in my legal practice, especially Lisa Rein; the Goldsteins, Bonnie Berk, Goldbaum-Ungers, Klinghoffers, Kuders, Applegates, Shikiars, Appelbaums, Bergsons, the VR gang, the GHS gang, my fellow Puget Sound Blood Center board and staff members, and many others whose names should be listed here.

Lastly, thanks to the doctors, nurses and other medical professionals at Seattle Cancer Care Alliance and Group Health who have given their time and expertise to me unstintingly. They are life savers in every sense of the expression.

The family looking its best!

Alan’s health update 10-12-2010

Things have been pretty quiet here on this site, since I’m just slowly building my muscles back up, and there’s very little medical news to report.  That’s a good thing.  I’ve been walking in the neighborhood every day, and recently walked 3 miles in one stretch using trekking poles for balance and support.  I’ve also begun driving short distances, which is liberating, but I admit I’ll miss all of the visits with friends and family who were kind enough to chauffeur me about town during the past several months (you know who you are; thank you!).

Another bit of progress is that I’m starting to work a little bit. I am very thankful for my law partner Lisa who has carried the workload for so many months. It’s about time I give her a hand.

I’m fortunate that I work at home, since the main thing that has been delayed is the return of my immune system.  In early September I started tapering off the immune-suppressing drug Tacrolimus, which protects against chronic Graft-Versus-Host Disease.  GVHD is where the donor’s cells are fighting my body’s (the “host’s”) existing cells.  This can manifest itself in various ways.

My GVHD has been in the form of dry, patchy skin on my face, dry eyes, and an elevation of the numbers that measure liver dysfunction.  Primarily because of the liver involvement, my taper was ended just a few weeks after it started and now I’m back on my original dosage of Tacrolimus.  Unfortunately this delays my ability to get off the drug for an undetermined period of time.  As long as I’m on Tacrolimus it would be risky to be in large crowds (especially during flu season) or riding in an airplane.  So certain aspects of my life will have to remain on hold for the time being, like visiting my parents in Virginia and vacationing with the Hatlens in Mexico.  That’s disappointing, but on the whole I’m just so thankful to be doing so well that I’m willing to postpone those things.

Thanks for all of your good wishes and support.  It has meant the world to me and Susan!

A quick getaway to Whidbey Island last week-here we're at Ebey's Landing

Alan’s health update 8-25-2010

Today is a milestone day for me, the 100th day since my stem-cell transplant and also the day I get discharged by Seattle Cancer Care Alliance back to my “home” oncologist at Group Health, Dr. Eric Feldman.   Susan and I feel like we’re letting go of our security blanket by leaving SCCA, but we have lots of confidence in Dr. Feldman, who has managed my care since my prior bout with cancer 10 years ago.

Yesterday we got excellent news from my attending physician.  He admitted that since both of my recent bone marrow biopsies showed no disease (using the best testing techniques currently known to science), my prognosis for a permanent remission is very good.  No guarantees, but we’re very hopeful.  I’m still at risk for episodes of chronic graft-versus-host disease, and my immune system will remain impaired for another 4 to 10 months, but those risks pale in comparison with the prospect of leukemia.

I continue to walk regularly (using trekking poles for balance) and do physical therapy exercises to rebuild my muscles, particularly in my pipe-cleaner-like legs.  Susan and I even went on our first out-of-town getaway in several months, spending a couple of gorgeous days at the Paradise Inn at Mt. Rainier.

Thanks again to all of you who have been part of our support network during these difficult months, and who continue to help out by sending encouraging emails and cards, offering rides, walks, and occasional meals now that Susan is back at work.  You all have been an integral part of my recovery, and I appreciate that more than you’ll ever know.

There are still mountains to climb!

Alan’s health update 8-13-2010

My 80-day post-transplant bone marrow biopsy last week showed a total absence of disease, same as the 28-day biopsy.  That was the good news we were hoping for.  Other good news is that I’ve been getting off of one medication after another – especially prednisone, which did a great job stopping my graft-versus-host disease, but at the same time ate away at my muscle mass until my legs are like toothpicks.  Now I am trying to walk as much as I can and diligently do my physical therapy exercises to regain about 30 pounds and some muscle.

In two weeks I will be discharged by Seattle Cancer Care Alliance back to my regular Group Health oncologist.  That will be another big milestone.  I’ll continue on most of the same medications, but after a while I’ll begin tapering off the last immune-suppressing drug, Tacrolimus.  And then later in the fall, I’ll be able to return to normal eating and being around groups of people again.  I’ve been warned, however, that my immune system won’t be back to full strength until at least a year after the May 2010 transplant.

I appreciate all of you who have been keeping track of me and giving me comments, emails, rides, meals and moral support.  I also appreciate everyone who responded to my post about the Swim for Life.  The Puget Sound Blood Center has already raised over $16,000 thanks to my family and friends!  Incredible.

Lastly, for the photographic portion of the post, my new cap recognizing my prowess blowing the shofar, which I don’t expect to be able to do this year at Temple Beth Am (my second decennial cancer hiatus). Apologies to “Guitar Hero.”  Thanks, Rick.

Shofar Hero

Alan’s health update 7-31-2010

You can expect to see fewer, less frequent posts from now on.  My progress has really been great, and I feel like I’m on a long, steady glidepath to both cure of the cancer and recovery from almost all of the symptoms of treatment.  My stem cell transplant was on May 17.  When my marrow was tested 28 days later, I was leukemia free.  I’ll be tested again next Wednesday, and expect more of the same.

Very important to me is that I’m in the process of weaning myself off of drugs I’ve had to take to combat side effects.  Within a few days I’ll take my last dose of the narcotic pain reliever I’ve had to take, primarily for pain in my legs and feet.  Today I take my final dose of prednisone, a real landmark.  I had to start on a course of prednisone in early June to combat some graft-vs-host disease (GVHD) in my gut, and this was totally successful.  My GI tract is working well and I have a good appetite (although I need to start adding back a lot of weight and muscle).  They began tapering me off of it within a couple of weeks, but the taper itself is slow and takes many weeks (my original dose was 180 mg, for those of you who have had prednisone for various reasons). Prednisone, although it has different (sometimes polar opposite) effects on different patients, has been seriously muscle-wasting in my case, and it has left me (along with my other relative inactivity since I started in and out of the hospital in mid-March) with about a 25-pound weight loss and leg muscles that are extremely wasted, skinny and weak.  To combat this I have started physical therapy (VERY basic stuff) and walk as much as I can with family and friends, usually using hiking poles.  But this rebuilding will take awhile. The prednisone also caused temporary diabetes, so I had to start taking insulin several times a day. With the prednisone finishing, I am now off of the insulin, and can stop poking myself all day long.

I will continue to be taking an immune-suppressing drug for a number of months, and this is what will keep me out of general circulation with groups of people, well into the fall even if all continues to go so well. But I can go to places such as the mall or stores or even restaurants if I can be satisfied that I can avoid coughs, sniffles or any kind of proximately to people who might be ill.  I have recently been to a couple of social gatherings where I can be outdoors, or I know the room will not be densely packed, but this is pushing the limits a bit, and we have to remain diligent.

I continue to see my medical team weekly and have blood draws twice a week, so my life continues to revolve around these sorts of visits and will continue to do so at least until I get off my last immune-suppressing drug.  And I have to remember the reality that there is always the chance I will spike a fever or get some infection or have some other unexpected setback.  I’ve also been warned that symptoms of chronic graft-vs.-host disease could crop up over the next few months even though I’ve had no GVHD symptoms since the gut attack that the prednisone addressed.  But right now it hardly feels like it’s going to happen, and I prefer to continue using my new blood type mantra of B Positive.

I’ll finish with a “shout out” and a request.  The shout out is to all you readers who in the first week after my “Swim for Life” posting have donated enough to register over 100 new stem cell donors.  Amazing.  And the request is to let me know if I might call on you occasionally for a ride from home to SCCA and back on early Monday or Thursday mornings when I have to go in for a blood draw.  It’s a quick trip, but with Susan going back to work I’ll need rides until I can start driving again, which might be another couple of months. Just drop me an email if you’re willing to be in my “pool” to call on from time to time. And thanks to those who have already done this for me.

The following picture has no relevance to anything except I think it’s hilarious.  My friend Rick Goldfarb took it while biking recently near Mt. Rainier (which is indeed a live volcano).

Stem cells – the gift of life

My own recovery from leukemia continues better than I could have dreamed or hoped, and I’ll talk more about it in a week or so.  Instead, I want to take this chance to tell you about the vital link between my cancer treatment and the work of one of my favorite organizations, the Puget Sound Blood Center.  And to ask for your support in its work.  If you don’t read the whole post, I hope you’ll at least skip to the last paragraph. Some of you will get this same message in an email from me; sorry for the duplication.

Many of you know that I’ve been on the Board of Trustees of the Blood Center for the last few years.  In fact, I became Chairman on January 1, almost simultaneously with my diagnosis with what became leukemia.  I had to resign the chairmanship only 20 days later in order to focus on what I was told would be a year of treatment—in the best case!

The day my disease was diagnosed, I was so anemic that I required a transfusion of 4 units of red blood and another unit of platelets.  The whole body only carries about 10 red cell units.  And because of the disease, I wasn’t producing my own.  So, despite the fact that my subsequent cancer treatment has been so successful, I would have been long gone before any kind of useful cancer treatment could start or begin to work to restore my body’s blood production system.  In fact, I’ve received 25 units of red blood and a dozen units of platelets from the time of original diagnosis until my (hopefully last) transfusion on June 1, when my new stem cells had begun to graft and produce blood cells.  When I had testicular cancer 10 years ago I also used over 2 dozen units of blood and platelets.

For those of us in the Northwest, Puget Sound Blood Center is the nonprofit organization that assures a safe and adequate blood supply.  This work is what first attracted me years ago and led me to donate 11 gallons of blood and platelets until my latest disease made me ineligible for future blood donations.

But the Blood Center also is a key organization in registering potential stem cell donors for the National Marrow Donor Program (“Be The Match Registry”), which benefits people all over the world as much as it does those of us in the Northwest.  It saved my own life when I received a stem cell transplant on May 17, 2010, from an unrelated marrow donor who lives on the other side of the world.

Life in a bag. My nurse shows me my new stem cells before infusing them.

Since I turned 50, I have been able to swim several times in the Blood Center’s annual “Swim for Life,” a 2.5 mile swim across Lake Washington each August.  This year’s swim on August 18 is specifically supporting the Blood Center’s efforts to register stem cell donors in the Northwest, an expensive proposition that is projected this year to cost the Blood Center $250,000.  This effort is especially important at the Blood Center, because of our Perfect Match program, which focuses on registering as many racial minority and mixed-race donors as possible.  This group is woefully underrepresented on the registry, even worldwide, and unfortunately race and ethnicity does matter in this sort of tissue typing.  A mixed race child or adult would have an extremely difficult time finding a match on the registry today.

Although I cannot swim this year for obvious reasons, I am determined to raise as much money as possible through the Swim so that other cancer patients around the world will have the same chance for a new lease on life that I have been given.

It costs the Blood Center around $100 to register each prospective donor.  Every day, 12,000 people search the Be The Match Registry for their key to a second chance at life.  Suffering from leukemia, severe anemia, or other life threatening diseases, their only hope for a cure, as was mine, is a stem cell transplant from a perfectly-matched donor.  Even with a national registry of 8 million potential donors, which ties into other registries worldwide, many patients never find a donor who matches them.

Please make a gift today to support this effort. The easiest way is to click here and give online. On the “Support a Swimmer” line, enter the number of dollars you’d like to give.  Then click “NEXT” and type “Alan” in the honorarium text box (no other information is needed), and then just keep following the payment instructions on the Blood Center’s secure site.

Or you can mail a check to the address below.  Please put my name in the “notes” line on the check.  For more information about this event, visit www.psbc.org/swimforlife, call (206) 292-2544, or email madelinef@psbc.org.

Puget Sound Blood Center, Attn: Swim for Life, 921 Terry Ave., Seattle, WA 98104. 

Thank you for truly giving the gift of life!

Maybe again next year?